Advocates for people with HIV in Illinois and Florida confronted health insurance companies this week in an effort to make sure people living with the disease continue to have affordable access to antiretroviral drugs.

The AIDS Institute and National Health Law Program (NHLP) filed a complaint Thursday with the Office of Civil Rights at the U.S. Department of Health and Human Services (HHS). They allege that insurers CoventryOne, Cigna, Humana, and Preferred Medical are violating the Affordable Care Act (ACA), also known as Obamacare, and federal civil rights laws. The complaint claims that these companies have designed insurance plans that make it so difficult for people with HIV/AIDS to obtain their medications that they opt not to sign up.

It’s an end-run, HIV activists say, around Obamacare’s stipulation that insurers cannot discriminate against people with pre-existing medical conditions.

The Florida complaint says that an analysis by the AIDS Institute shows the insurers required expensive co-insurance or co-pays, prior authorizations, high up-front costs, and limits on the amount of medication a patient could obtain at one time.

The filing in Florida comes on the heels of a move by Illinois Department of Insurance Director Andrew Boron. Boron warned insurers that the “prohibition on discrimination applies equally to all health conditions, including but not limited to individuals with HIV/AIDS.” He urged insurers to stick to recommendations from the HHS when it comes to offering affordable drug regimens to treat HIV/AIDS.

“We certainly understand that the plans are trying to manage their costs, but when cost management has the impact of people not taking their meds, and particularly meds that are life-saving, that is going to have a real impact on people ending up in the hospital,” John Peller, interim president and CEO of AIDS Foundation Chicago told Healthline. “It’s really just counterproductive to charge these incredible high rates.”

Peller also pointed the finger at big pharmaceutical companies. “We also have to hold the drug manufacturers responsible for their pricing decisions,” he said.

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Insurers Defend Their Practices

Activists acknowledge that the U.S. is in the throes of the largest change ever to its healthcare system, and that kinks still need to be worked out. But they also pointed to Louisiana, where Lambda Legal recently filed a lawsuit against Blue Cross Blue Shield of Louisiana (BCBS). The company indicated that it would begin refusing to accept Ryan White payments on behalf of low-income residents in that state. The insurer has agreed to accept Ryan White payments through November, when the next open enrollment period begins.

Low-income people in Louisiana rely on the federal Ryan White Program to get their medications. And limited access to medication can can create a larger public health problem. Without medication, a person’s viral load rises and his or her risk of transmitting the disease increases.

The insurance companies mentioned in the Florida complaint defended their plans and pricing in statements to Healthline. “The Exchange plans offered by Coventry provide access to HIV care that follows the latest Department of Health and Human Services guidelines and evidence-based practices," a spokesperson said. "The Coventry formularies meet ACA requirements and provide access to the drugs necessary for treatment under the current clinical guidelines.”

Treatment of HIV has evolved tremendously through the years. The disease has shifted from an almost certain death sentence in the 1980s to a highly manageable condition today. In fact, many people diagnosed with HIV in the U.S. today can expect to live just as long as the average American, if they can obtain the medications they need and take them as directed.

“They want to make their plans attractive to healthy people, so they do anything they can to increase the out-of-pocket cost and make plans less attractive to people with chronic diseases,” John Peller, interim president/CEO of AIDS Foundation Chicago, said of some insurers.

In a statement, Humana told Healthline that its plans cover the cost of HIV medications, which are considered “specialty” drugs. The drugs are in the fourth of five drug pricing tiers. “Once the out-of-pocket maximum is reached for the year, the plan pays 100 percent of the cost for any drug therapy, including HIV drugs,” the insurer said.

Patients first need to pay their pharmacy deductible, the insurer said, and “any applicable tier 5 co-insurance percentage (32 to 50 percent [of the drug's cost], depending on the plan) until their maximum out-of-pocket limit has been reached. At that point, the plan would pay 100 percent of any additional costs.”

The ACA caps out-of-pocket expenses for self-only coverage on high-deductible health plans at $6,350 per patient per year, Peller said. 

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Finding the Right Plan

What’s more, Peller said, the out-of-pocket costs can’t be made in payments over time—they have to be paid continuously until the cap is reached.

Atripla, a preferred, one-pill combination drug treatment, costs about $24,019 per patient per year in the U.S.

“They want to make their plans attractive to healthy people, so they do anything they can to increase the out-of-pocket cost and make plans less attractive to people with chronic diseases,” Peller said of some insurers. “This is something we all were afraid would happen.”

AIDS Foundation Chicago operates a website, HIV Health Reform, which helps people with HIV navigate state-specific laws. The foundation has teamed up with the Harvard Law School to help investigate complaints of discrimination by insurance companies in providing coverage to people with HIV.

Wayne Turner, an attorney with NHLP, said his group filed the complaint with HHS after the AIDS Institute analyzed plans on Florida's health insurance exchange website.

“Plans can remedy the situations we’ve described by adjusting cost-sharing structures,” he told Healthline. “It’s happening all over the country. Some plans are dropping drugs from formularies after people have signed up.”